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Thursday, July 9, 2015

Kadcyla is a targeted
cancer treatment being used in patients like me who have metastatic breast
cancer that has progressed using taxane based chemotherapy.

Common side effects of Kadcyla
include

fatigue

tiredness

nausea

musculoskeletal pain

headache

constipation

low platelet count

liver problems

low levels of red blood
cells

nerve problems

low levels of potassium
in the blood

But, if there is
something I have learned about cancer treatment, there really aren’t common
side effects. I have frequently experienced the opposite effect of
many drugs. The truth is making notes about my side effects helps me
compare what is happening from one treatment to the next so I can determine
which responses are likely side effects from the drug and what may be the
result of something besides cancer treatment. I find this helpful in
using meditation to manage some side effects and proactively taking medication
for others.

Today was my second
round of Kadcyla. I am on a 21 day cycle - I get an infusion on day one
and then 20 days of the drug doing magic inside my body. Then we start at day 1 again - and that is
what makes it a 21 day cycle.

Side effects I have had with Kadcyla

The first side effect
is absolutely an emotional response. As the nurse hangs the
pre-med and chemo bags on the IV pole I start to feel a headache coming on
in anticipation of the real headache that the drugs give me. Recognizing
this false side effect leaves me taking a deep breath recognizing that I don’t
have a real headache and focusing on something else like Facebook, Pinterest or
TV.

About 2 hours into
treatment the skin around the IV needle that goes directly into the port in my
chest gets itchy. I am not sure if it is the drugs or the tape. I
notice the itching, but it isn't anything that affects me more than this recognition.
But, when itch starts I always look at the site to be sure there is no
redness or indication of a reaction to the medicine. But, so far I haven’t
had that very often. When I do have a reaction, stopping the treatment, getting
an extra dose of Benadryl and resuming treatment at a slower pace has worked.

The side effects I do
have from this drug are listed below with an explanation of severity
and how I manage the side effects.

The feeling I need a nap: these hits after getting the pre-medication
cocktail. The pre-medication cocktail includes Benadryl to prevent
an allergic reaction to the chemo and anti-nausea medication for the
obvious reasons. How I manage: sometimes I take a
nap and sometimes I don’t. If you
are a patient getting chemo and you feel the need to nap I encourage you
to do it – rest is one of the best medicines.

Headache: I usually get a headache after getting chemo and
Kadcyla is no different. The best
treatments for this include: hydration to be sure there isn’t any
dehydration contributing to the pain, a brisk walk to push extra oxygen
into my body, plain old pain killers to knock out the pain so the side
effect doesn’t spiral into something worse, and when it is worse I have
medication to treat migraine headaches.

Exhaustion: this isn’t just the need to nap but the inability to
focus on anything and feeling like I can barely sit up. It’s complicated by the feeling that I
can’t walk from the living room to my bedroom to get into bed or the
feeling that once I get into bed I won’t have the strength to pull the
blankets up. Oh, that sounds so
dramatic! But, that is how “tired”
feels when you are going through cancer.
I am not going for a dramatic scene because a cancer patient is
usually too tired to care about drama and attention. ~That is how I am
anyway. The best treatments for this include: if I can possibly push past
mild or moderate tiredness to act and live normally I do it! Last time I got Kadcyla I was asleep
most of the time for 4+ days. It is
always the worst on the first treatment when my body is shocked by the new
drugs along with the emotional workout of starting something new. The best treatments for me include:
resting – when you can’t stay awake any longer then go to sleep, eating
healthy protein and some produce – if your body needs the nutrients and
you choose good food you can practically feel life coming back into your
system, hydration – again just be sure there isn’t any dehydration
contributing to the tiredness.

Potty problems: This is so personal and probably not something
friends want to read – so just skip this one! For other cancer patients who may be
suffering with diarrhea or constipation you are probably DESPERATE for
help. I know how that desperation
feels so I am going to tell you some secrets. The best treatments for this include: the first secret is a good doctor or
nurse will ask about your bowel movements.
There isn’t a drug used to treat cancer that doesn’t cause either
diarrhea or constipation – welcome to your new life. Second, treat this symptom – don’t just
endure it. I have tried to endure
and it really messes up life more because you feel rotten and don’t want
to leave the house. When you leave
the house you are at risk of getting stuck in a public restroom with a
real issue. NO BUENO! For constipation: Be sure you are drinking enough water; I
have read you should divide your body weight in pounds by half and drink
that many ounces of water each day.
An over the counter stool softener for constipation is a good
idea. There is also a solution at
your local drug store for severe constipation – a bottle of Magnesium Sulfate
which is kept near other constipation remedies. For less than $2 you can have a drink
(at least ½ the bottle) and within hours things get moving. For diarrhea:this is another issue all together. The best trick I have is something I
learned from a nutritionist at Cancer Treatment Centers of America. She taught me that a banana with a
citrus in a smoothie along with pectin can bulk up what is in your
intestines and correct the problem. (Try some pineapple, a banana, pectin and almond milk/coconut water.) Also, make sure the bacteria in your gut are healthy – add culterelle
or something similar to your daily pill popping regimen. If this doesn't solve your issue - keep searching for a solution. Problems in the bathroom are aweful. OK – ENOUGH POTTY TALK.But before you use any of these
treatments TALK TO YOUR DOCTOR – they need to be aware of your side
effects and you want to be sure there won’t be any negative or dangerous
interactions with other medications you are taking.

I
have found the best way to manage side effects is to keep track of them so you
know when they are hitting you, if they are getting better or worse from one
treatment to the next, and to figure out what is working and what isn’t working.

Just
don’t suffer through side effects, this is an issue that caregivers can help
with a great deal because cancer patients might be too overwhelmed to remember
and talk about side effects. A cancer patients body is doing enough work
fighting cancer, processing chemo and coping with the emotional components of their
illness. Side effects can really bring
you down because a cumulative effect and there are usually solutions to the
side effects. You
can’t survive beautifully when you are suffering more than you must.

Wednesday, June 24, 2015

As I am starting the next phase of chemo treatments and have
new biopsy reports back it is a great time to clarify some of the logic behind
this crazy cancer care.

When I was diagnosed with breast cancer originally back in
2006 I was very young, only 30 years old.
I had 3 children, the first was born before I turned 26 and I breastfed
all 3 children – so, in spite of having children and breastfeeding (two factors
that decrease likelihood of breast cancer) I still got it, and very young.

While doctors can get a pretty good idea of whether you have
cancer or not, positive confirmation is done through analysis of cells. So, the biopsy is the definitive determination
of whether you have cancer and what type of cancer you have. Additionally, they test breast cancer cells
to understand which elements may be feeding the cancer growth. Three key elements are tested. The first 2 test the amount of hormones,
estrogen and progesterone, present in the cancer. The outcome is referred to as being estrogen
or progesterone positive or negative.
Positive = the cancer feeds off of that hormone. The third element test for a protein called
human epidermal growth factor receptor 2 (HER2), which promotes the growth of
cancer cells. Again, positive
means that the cancer feeds on this protein. About 1 of every 5 breast cancers has
a gene mutation that makes an excess of the HER2 protein. HER2-positive breast
cancers tend to be more aggressive than other types of breast cancer.
(mayoclinic.org)

So, you may hear about a breast cancer that is triple
positive, triple negative, hormone negative and Her 2 positive or hormone
positive and HER2 negative. My cancer
was triple positive – estrogen, progesterone and HER2 all assisted in the
growth of my cancer. This is a very aggressive
form of breast cancer and, until targeted HER2 therapies were developed, was
very deadly. With the discovery of
Herceptin in 2006 for non-metastatic breast cancer and now Perjeta which was
FDA approved in Nov. 2014, the prognosis is significantly better.

Wanna geek out? See the Herceptin timeline here.
See the timeline of other Genentech drugs, including Perjeta here.

In 2011 when I was diagnosed with metastatic breast cancer
the cancer had spread to my spine and sternum.
A biopsy was done, which confirmed that the cancer cells originated from
breast cancer. So, while the cancer was
making a home on the bones, it is still breast cancer. This is true of any metastatic cancer. It is still the cancer of the original site,
whether breast, skin, colon, lung etc.
But, it has spread to a distant site, which is what makes it
metastatic.

The 2011 biopsy of my spine showed the tumor to be hormone
positive by HER2 negative. So, the
treatment I had previously for the HER2 protein was effective.

In 2014 I had a lymph node in my stomach with cancer
activity. That biopsy revealed the
cancer was again triple positive, so we added the Herceptin and Perjeta back
into the regimen.

My most recent new cancer growth, a lesion on the liver, has
been biopsied and shows to be hormone positive and the first test (a stain)
showed it as HER2 negative. A stain test
is very subjective because a lab employee is comparing the amount of staining
in the specimen to a known positive cell. What one diagnostician may say is a
2+ another may call a 3+. Therefore,
another sample is sent to a central lab for a FISH test. The FISH test is objective because the diagnostician
counts the number of HER2 receptors on the cell. The FISH test came back saying the tumor is
triple positive.

So what does all of that mean? Well, we know the chemo I have been taking –
taxol – is no longer effectively controlling the cancer because tumors have
started to grown in the liver. We also
know that the HER2 treatments are ineffective because that protein has not been
suppressed in this new growth.

Last Thursday I began a treatment called Kadcyla/DM1. Kadcyla was approved in March 2013 for use in
metastatic breast cancer treatment. See press release here.

In my opinion, it is good that the liver lesion
presented. The liver lesion gave us soft
tissue for a biopsy which tells us about the chemical make of the new tumors in
my body. This makes the choice of drugs
based in science, not a best guess. With the tissue sample we are also hoping to
get genomic testing of the tumor done. What is genomic
testing? Well, it is looking at the DNA of the cancer cells and determining
which part of the DNA is damaged. It
answers questions such as which chemo agents will work best on a subtype of
cancer, other therapies that could be effective, etc. Hopefully over time these tests will become
more advanced and will provide even more information.

All of life is a series of chemical and biological
reactions. Cancer is just one of these
reactions that went wrong and then reproduced incorrectly out of control and
creating a mass of damaged cells in someone’s body. Understanding the science of cancer is the
first step in choosing smart treatments.
I am hoping other chemical reactions will help me to control/master the
cancer in my body. I believe that
complimentary medicine, treatment offered along with the western medicine I receive,
could help my body fight the cancer growth.
At least, it will make me feel good about what I am doing for
myself. So, one complimentary treatment
I am choosing to add is nutrition.

Kadcyla has the side effect of losing your appetite and this
is all the more reason to be thoughtful about what I am putting into my body. One change is buying organic produce
according to the Dirty
Dozen, Clean Fifteen theory. Also, I
am realizing how hard it is to get adequate protien – again the lack of
appetite. (Guidelines
on protein consumption) But, one thing that I have started, and enjoy a
lot, is juicing. Did you know you can
juice cabbage? Did you know broccoli
juice is bitter? I am increasing my fruits
and veggies and like what I feel like when drinking fresh juices.

Tuesday, March 24, 2015

I have been off chemo since December. It didn't start off as a plan to be off for that long, but there were the holidays and then I started having such intense back pain we wanted to get under control. That pain became debilitating, traveled down my leg and progressed from numbness and difficulty lifting my leg into the car became an inability to walk without focused effort and excruciating pain.
One Monday I was in bed when a friend called. I had been crying and praying for help when she rang. I answered the phone in sobs. She dropped everything and took me to the ER where a lot of drugs and a couple of follow-up appointments later I found out the cancer spread to the nerve endings in my spine. I began radiation and got relief within days. My leg is no longer numb. I can lift it again and have recovered a significant amount of strength. It is truly miraculous to me how quickly I went from traveling across the country for the holidays and then work to being unable to get out of bed and then was back to work again. Another proof-case for the need to enjoy every good moment of your life, and treat all of them like they are good because tomorrow may be so rotten you will wish it was today again.
All this time off chemo has given me so much to be thankful for. I could say it shows me how much I have been missing, but that just sounds sad and makes me feel low. I prefer to see the glass half full.
I have hair. It took about 2 and a half months to grow enough eyelashes and get them thick enough that they brush on the lenses of my eyeglasses. I also went in and got a haircut - something I haven't done in about 2 years with the exception of having my neck trimmed once. I loved it even though I knew I would be loosing my hair again soon. That day it needed cut and I just enjoyed that experience rather than debating if it was a waste of time and money. Living for the now!
I have also had a different parenting experience lately. More energy and strength means more normal activities like running errands and crafting and cooking. I forgot I liked to cook.
My entire body feels different than it has in a long time. Is this how the rest of the world feels?
But, the chemo-cation is about to end. T minus 1 day until they start dripping the next hope for NED (no evidence of disease) into my veins. I have been reading up on all of the studies again.
I have read about Marianne, Th3resa and Emilia - all girl names and none referring to a girl. These are drug studies for chemotherapy protocols for metastatic breast cancer treatment. My most recent regimine, Herceptin + Perjeta + Taxotere, sent me to the hospital for vomiting 2 out of the 3 weeks I was getting treatment. I also had migraines and dreaded simple things like walking from the car to my office. We are now looking to switch to Taxol with Herceptin and Perjeta if it is approved by the insurance company.
A few weeks ago I took the Herceptin and Perjeta without a chemo agent. I still had a migraine, though much more mild - only one day - and I recovered to a near normal energy level after 2 days.
Anticipating what will happen with this round is stressful. What will I feel like, will it be manageable, and if not, how bad will it be? I don't think the kids can cope with Mom staying in the hospital again. I don't know if I can cope with feeling rotten after feeling so good.
So, I know the anxiety will grow over the next day and a half. But, I also know that God is with me - He is in control and has the power to see my little family through whatever is coming.
So, in spite of the nerves and unknowns, I move forward with conviction and gratitude that I am not alone.
God bless us, every one.
Kel

Monday, January 12, 2015

I have enjoyed a string of happy weeks in a row. It started with Thanksgiving- my favorite holiday. We had another great year celebrating with friends. It's always so great to be at their house because it is a happy place and they are all (adults and children) great chefs and bakers!

Next, with the generosity and love many, we spent Christmas in Utah where I grew up. I loved being with most of my family, baby bro couldn't bring his new bride home, but the rest were together. And, I got to connect with many friends including my best friend since 1st grade.

And, after Christmas a couple of friends from Idaho came down to Texas to make life easier for me by storming in and cleaning the house and putting together freezer meals.

From my first grade bestie to these awesome women who became dear friends after I entered motherhood I am reminded how valuable friendships with other women can be through out life.

Having women who see you as you are, admire your talents, accept your short falls, and make you feel good about who you are and what you can still become - does it get better?

If your friends don't do this for you - get new friends.

I am so glad for these happy weeks. My soul feels refreshed. I am going to use this fresh feeling to approach the coming treatments with a brightened outlook. I have grown so weary from treatments and hospital stays over the last years, especially in the last 4 months.

I am going to take a snapshot of this renewed feeling so I can remind myself in the coming weeks.

Saturday, January 3, 2015

We have just returned home from 11 awesome days with family. I don't make it back to Utah often- it's just so far away, takes so long to drive and the cost of airfare is insane. This was our third visit in the 6 years we have been away from the region and was the most enjoyable for sure. It was so fantastic to see the mountains and be with my sisters.

I loved getting reconnected with nieces and nephews- all amazing kids with great parents. I am so grateful that even those little ones who don't know me well endured the hugs and kisses with giggles and loved me back.

While being away from my cancer was a good change I started having really intense pain in my hip and numbness radiating both down my leg and across my stomach. No question something is happening. The Dr. thought it might be arthritis, but it feels more significant than that now. Even getting back home to my bed I am having trouble. I am also noticing some swelling in my leg - I think it could by lymph fluid that isn't draining. Ugh!

I had some testing before leaving town. Now I have a couple of intense days at work before I will be back at the Dr. I am feeling concerned about what it is going to be. My greatest fear is a spread of cancer in the lymph nodes around my hip. That would mean this chemo isn't working and we need to switch again. What will the next one be? How will the side effects be? How long will it work? And, why isn't this new cocktail working?

I like to joke that maybe the answer is that I don't even have cancer. LOL.

I feel like I have aged 10 years since starting this new chemo around Halloween. I feel pale, my eyes dull, my skin old and my spirit less hopeful.

Add to this the worries about loosing my FMLA qualification since I am moving to a new employer (same job) and I am truly worried about the future.

What happened to my faith?

I am completely dependent on the Lord and the mercy of others if things take a downturn. And, it isn't that I haven't been blessed by both, it is just the potential for a perfect storm on the horizon.

I am a Mormon

About Me

When it was time to find a place where we would make some new dreams the world was wide open to us. We decided to make Texas our home because, well, who wouldn't like to say "I'm from Texas"?
After living in Texas for about 2 years and being a cancer survivor for almost 5 year (I had cancer, but was almost 5 years out from strong chemo, surgery, and radiation) IT CAME BACK.
I am now a Stage IV Breast Cancer Warrior trying to maintain dignity and beauty while building a career and being a single mom.
Serenity Now!